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Is there anyone else out there with this type of cancer? The amount of information on the net is hopelessly small. I have been to all the confusing study oriented sights (the ones that spout deep medical language that I can't understand). Prognosis does not seem very promising. All the studies and statistics I've seen shows a median survival rate of only about 4 years after MTX chemo and radiation treatments, and that's if you have no underlying health issues (diabetes, liver problems, etc). My assumption is that the cancer is so rare and so aggressive that few survive to join this forum.

I'm one of the "lucky" ones. 54 years old with a strong immune system, no underlying illnesses, and responding very well to treatment. Side effects from Rituximab, Methotrexate, Vincristine, Procarbazine, and Cytarabine (with Whole-Brain Radiotherapy to start next month) are not too severe and are controllable with meds. I was diagnosed by biopsy in May after a bad seizure and 4 days in a coma (the first indication that I was sick)!

I would desperately like to communicate with anyone that has ANY exposure to this type of cancer.

Hi and welcome to the forum. just remember stats are just stats. I have GBM with a medium survival of 13.6 months . Im almost at 16 months and I feel great and physically Im doing pretty dang good. Wish I could help with your type of cancer

Welcome Boats!
I am the wife of a PCNS Lymphoma, diffuse large B-Cell patient! And you are right, there aren't too many of us out there. I follow along here with everybody but mainly brain tumors because their symptom sometimes are closer to what we see than Lymphoma. Right now, they think he is in remission, no change but there si something still there that they think is swelling or edema.... so you watch and wait. The end of April completed his HD MTX treatments, 8 every two weeks then 11 every four weeks. Took a little hit to the kidneys which made them reduce the amount of MTX to the minimum that would get through the BBB. In the same boat with age, will be 54 soon. Would also like to hear from you about their choice to do radiation at this point, it has been one of my BIG concerns.Would be happy to chat with you by PM or on here. Glad to hear you are doing well so far!

As far as radiation is concerned, I'm part of a clinical study that will be using low dose radiation. The previous study used a total of 45 Gy and had all kinds of toxicity issues. The plan for me not to exceed a total of 25 Gy. It seems like I'm being used as a lab rat. The low dose should lower the toxicity issues, but may not be strong enough to effect the tumor. We'll have to wait and see. I'll let you know how it works out.

Hi there, I'm fairly new here but I would love to communicate with you anytime. I do not have PCNSL, I actually have secondary CNSL, relapsed from primary DLBCL. There are very few with PCNSL, fewer with my diagnosis. So I know exactly how you feel. The prognosis is sh!t for sure, but I like to think of myself as the 1%. I am the one that will survive. I am the one that will beat the odds. I am not going to let this beat me. I know no other way to attack this. You are welcome to read more about my journey on the thread I started here:

Welcome Boats!
The end of April completed his HD MTX treatments, 8 every two weeks then 11 every four weeks. !

My God! That sounds like a lot of MTX! My treatment consists of 1 Retruxan infusion at the doctors office (then I return home) once every 2 weeks followed by an inpatient infusion of MTX the following day. I stay inpatient while being monitored for MTX levels at 24, 48 and 72 hours. MTX levels at 24 hrs have averaged 1.4 mols/mml and it is suggested to be below .01 before discharge, but my Onc will release me once the levels get below .08 or so. I have never had to stay past the 48 hr. levels check. I have had 6 of 8 cycles so far.

Quick side-effect treatment tips - Mouth sores, bloating and constipation have been my major complaints (with lesser effects from finger tip and foot narcropothy although only resulting in difficulty doing detailed work with my hands and fingers, tying my shoes and removing the seals on individual pills is a struggle, but the numbness in my feet is limited to the pad just behind my toes and extending to the arch. No "foot drop" yet. I also suffer from severe fatigue and horribly irritating eye and nose watering and a slight challenge to my balance when walking). I have been taking Folic Acid (at recommended dose levels) for treatment of mouth sores. It seems to have a positive effect. Also, dill pickle slices reduce the metallic taste from foods and make them taste significantly better for a short time after eating them. For bloating I cannot more highly recommend "Complete Spectrum Plant Based Enzymes" Ultra Plan is the brand I use and is available at High Health stores (but like products are available just about anywhere). It is one of the less expensive enzymes available - just read the labels and get the cheapest one that breaks down protein, fats, carbohydrates, fiber and milk sugars, anything else is just marketing hype. I take 2 before each meal or every 8 hours if I'm not eating. It is a true Godsend! For constipation I take 1 daily dose of Miralax. It's a white powder that dissolves in 6-8 oz of juice or water and has no taste (excellent for downing other medications). Walgreen's has a brand called "Smoothlax" which is the same thing only 1/2 the cost. It is an Osmotic laxative and stool softener that's gentle enough for everyday use.

Sounds like they are giving you radiation instead of the eleven maintenance MTX treatments. Lucky you to get out in 48 hours, I spose because of the creatinine rise indicating kidney issues, he would go in on Thursday and get to come home on Tuesday. Grateful the stuff is working but SO sick of staying in the hospital. I have heard that using plastic silverware will help with the metallic taste also. Have they got you on any kind of blood thinner, clots are very common with PCNS also with the chemo, kind of a double whammy. Still dealing with the fatigue here and dry eyes drive him crazy which adds to the feeling of fatigue. PM me with the other website you have been referring to. Glad to hear you are nearing the end of your MTX treatment, it's a booger!

I'm still on primary treatment (standard treatment) of high dose MTX (3.5 gm/M2). I'm not on a maintenance schedule (yet). And don't get me wrong, I receive many more drugs than what I have listed here. They include... Kepra (anti-seizure), dexamethazone (anti-inflammatory steroid) and pepsid (anti-nausea) daily. Leucovorin (kidney rescue medication to protect from the effects of MTX), Procarbozine (slows or stops the growth of cancer cells in your body), Filgrastim (also known as Neupogen which stimulates bone marrow to increase production of white blood cells), benadryl (rescue medication for Ritruxen), lorazepan (anti-anxiety), and acetaminophen (taken during Ritruxen infusion). After the standard treatment is completed, I begin consolidation chemo using Cytarabine (damages DNA of rapidly dividing cells used mainly in the treatment of non-Hodgkin lymphoma), and Neulasta (white blood cell booster, similar effects to Neupogen). At that time I will also be evaluated for possible radiation therapy (which isn't a done deal yet).